The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

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Saturday, August 14, 2010

Sent: Saturday, August 14, 2010 9:48 AMTo Celebrate WPI's Grand Opening, Email Annette Now, and Donate if you can on the 21st

[lp: Please spread the word, please repost. If you email soon, that willgive Annette time to get the emails printed to be part of the openingceremony. Many are saying that they will donate on Aug 21 itself.]

*Help Celebrate WPI's New Home & the Grand Opening of the Center forMolecular Medicine*

* *

On Saturday, August 21, 2010 the University of Nevada's Center for MolecularMedicine will officially open its doors. It will house portions of themicrobiology, pharmacology, pathology and physiology and cell biologydepartments and serve as the headquarters for the Whittemore PetersonInstitute for Neuro-Immune Disease.

* You can make a secure online donation through XMRV Global Action cause athttp://www.causes.com/causes/421525 Just scroll down to "fundraising" andclick the "donation" button. This method has an option that allows you tomake monthly donations as well.

Thursday, August 12, 2010

Patrick Wood, MD, a senior medical adviser to the NFA, believes that sexism may be at the root of this.

"Why in this society are we so free to dismiss the complaints of 30- to 50-year-old women? Why can we marginalize their experience so easily? It really does become an issue of gender politics. Why can we marginalize her and disregard her complaint, and yet if she were a man the same age we might take her seriously?"

* * *

This is frequently a subject of discussion in mixed-gender groups. Our male members complain about how badly doctors have treated them until they hear what the women have had to endure.

When I first got sick in 1987, my boss had similar symptoms. He was sent to more and better specialists for more and better tests. After my first batch of test results came back negative (tests which *should* have been negative with CFS), I was told "just tell your husband you want to quit your job" and further tests were refused. No one ever suggested to my boss that he tell his wife he wanted to quit. No one ever suggested he was faking. At least we could laugh about it, "so much for women's equality" -- we could no longer delude ourselves that society had advanced far enough to automatically treat men and women equally.

When I relapsed in 2000, I found it's not just the older generation. Male doctors younger than me also made comments to me as a woman that they would not make to men, about being a "depressed divorcee" and "wanting to get alimony".

Newsweek.com recently ran an article titled, "Prescription Nation: Why we should worry about prescription drug abuse," that was not only one-sided and focused on deaths from pain medication abuse and misuse, but ultimately reinforced the stigmas and stereotypes associated with pain and pain management. With a readership of more than four million, this alarmist article only contributes to barriers for people in pain.

While abuse and misuse of prescription medicines are a serious safety concern, with often devastating consequences, writer Raina Kelley failed to explore and share personal accounts from some people with pain whose needless suffering is ended and quality of life is significantly improved by taking prescription pain medication as directed and prescribed appropriately by knowledgeable health care providers.

APF was particularly concerned with several biased and unfounded comments in the article, including a quote from a doctor who works at an addiction treatment center who stated: "Opioids are really dangerous.Boomers, of course are entering their 60s, and with age comes all kinds of pain problems. If boomers aren't treated properly, they, too, go overboard." This comment is insulting and insinuates that this generation will become a group of addicts if they are prescribed opioid medications. Unfortunately, the article did not contain any quotes from an expert qualified to speak about addiction and pain.

Lastly, Kelley focused on celebrity deaths linked to prescription pain medication and questions how many more celebrity deaths are "needed" before people pay attention. She failed to mention how many people have died from untreated or undertreated pain and the cost of pain to our society. Every sensationalized celebrity overdose death only makes it more difficult for the more than 76.5 million Americans who have or have had a problem with pain to be believed and treated in a fair, unbiased way.

WE NEED YOUR HELP IN STOPPING THIS ONE-SIDED MEDIA COVERAGE

TAKE ACTION NOW!

We encourage anyone affected by pain, including people with pain, loved ones, caregivers, and health care providers to join us by submitting a letter to the editor and posting an online comment, insisting that Newsweek act responsibly and demanding balanced reporting with accurate information about prescription pain medication.

a.. Tell Newsweek that you are outraged by Kelley's one-sided article. b.. Include personal examples about how the stigmas associated with pain have affected you, a family member or one of your patients. c.. Give examples of how - when untreated - pain has negatively impacted all aspects of life while living with pain (e.g., difficulties getting out of bed or performing self care, interfering with your work, inability to hold or play with your children or grandchildren). d.. State how, when properly treated, your life or a patient's life can return to some sense of normalcy. e.. Encourage Newsweek to do a follow-up interview with an expert who is qualified to speak about pain and addiction. f.. Reiterate that the lives and livelihoods of people lost to pain are worth no less than the celebrities and others who have died after abusing or misusing prescription pain medication. Untreated pain has been shown to shorten the lives of those who suffer - some who no longer consider their lives worth living see suicide as their only option. g.. Reinforce that regardless of people who abuse or misuse pain medication, people in pain have a right to timely and effective pain management. Next Steps:

1.. Read the full Newsweek article. 2.. Send your letters and comments directly to Newsweek at letters@newsweek.com . Letters should be under 200 words. Include "Raina Kelley article" in your subject line. 3.. Post a comment in the comment section immediately following the online article. Follow posting directions on the web page. 4.. Share this article with your family members, friends, colleagues, health care providers and encourage them to respond to Newsweek. Don't forget your Facebook and Twitter contacts. 5.. Please let us know when you have taken action by simply cutting and pasting your message to Newsweek into an email message and send to APF at media@painfoundation.org . To assist you further in your letter, click here to view our Reporter's Guide that includes information about pain, prescription pain medication and how untreated pain impacts society.

Thank you in advance for your response to Newsweek. We cannot do this alone - by combining our voices we can Conquer Pain Together!

The American Pain Foundation

Other ways to get involved in our efforts:

a.. Keep up with us on Facebook. b.. Follow APF on Twitter at www.twitter.com/americanpain for the latest pain news and information and at www.twitter.com/painadvocacy for information on advocacy, policy and public awareness activities. c.. Check out our online Pain Awareness Month Advocacy Toolkit. d.. Visit the Exit Wounds site to learn more about our Military and Veterans living with pain. e.. Join PainAid, our online support community.

On the 21st of August WPI will be officially opening their new building atthe University of Reno, Nevada.

WPI have done so much for us all already, I was thinking it would be so goodif the ME community, family and friends could show it's appreciation andsupport for them by making donations, no matter how small, even just $1, onthe 21st. Let's see how much we can raise for them on their opening day

"denying patients access to this testing also results in denying them access to treatment that has been found successful for patients who have such biomarkers or pathogens.

CDC's emphasis on one test-one result also denies the reality that most patients with "CFS" (according to the original definitions) have more than one thing wrong with them. But there is no way to tell that from the CDC website (See http://www.cdc.gov/cfs/general/diagnosis/testing.html)"

"While these tests might not be useful in "diagnosing" a single entity called "CFS", they are very useful in understanding and treating CFS."

"the pattern of biomarkers and viruses - not a single test – is critical for understanding various subgroups that could now be defined empirically, if CDC permitted it. And by listing everything as if each was a single test, and each test represented a different disease, CDC effectively misleads anyone who comes to their website seeking an understanding of "CFS."

"We have reached a point where CDC explicitly defines CFS to exclude the very patients they were charged with helping."

"British psychiatrists used a definition that omitted the sickest patients, excluded anyone with a physically diagnosable condition, and included patients with depression and anxiety disorders. Nothing could be further from the Fukuda definition – yet even today, because they say it is "CFS," the media and many medical experts assume it is the same thing."

"will the medical community come to its senses and realize that the real disease is in the patterns? Will they finally understand that the subsets of this disease were diagnosable with biomedical markers a long time ago?"

Based on publicly available federal court records, Unum, Unumprovident,Provident Life, and Paul Revere companies have been named in almost 5,000civil actions concerning insurance from 2000 to the present. The conductof these Disability Insurance companies has been beyond outrageous. Timeand again they have unfairly denied Disability Insurance Claims.

The following are findings of fact and law in a recent Federal CourtTrial concerning Unum, Unumprovident, Provident Life, and Paul Reverecompanies:

Early in the 1990's Defendant UnumProvident realized that the claims madeon the own occupation insurance policies that it sold were putting thecompany at risk. As a consequence the company underwent a majorrestructuring of its claim handling practices and philosophy.

Provident went from a company that had a claim payment philosophy to onethat had a claims "management" philosophy. The results were profound.

Among the tactics that Provident developed as part of its new claimsmanagement approach was the targeting of what it labeled "subjectiveclaims." These were claims based on mental or nervous disorders orclaims such as fibromyalgia or chronic fatigue syndrome ("CFS").

These claims which could not be proven by hard medical evidence suchas an x-ray were thought to contain a large potential for resolutionbased on the vulnerability of insureds to pressure tactics.

Another of the tactics that Provident implemented was its practice ofclaim objectification. Through its practice of imposing objectiveevidence requirements on its insureds, when its policies contained nosuch standard, Provident sought to defeat their claims. This standardwas imposed even on claims, where the company knew there was no wayto obtain objective evidence.

A third tactic that Provident developed was its use of round tablereviews. These reviews which involved claim personnel, medical staff,vocational staff, legal counsel, and management personnel focused onhigh indemnity claims. While notes were occasionally made of whatdirection the claim should take after a round table review, companypolicy was to destroy all information regarding who participated inthe meetings, what was discussed, and the basis for any decision.

Defendants' also attempted to cloak the round tables with the attorney-client privilege in order to further insulate the actual claimsdecisions and basis therefore from review.

A fourth tactic that was developed was the Defendants' practice ofshifting the burden of claims investigation to the insured. It isundisputed it is an insurer's duty to conduct a reasonableinvestigation into all available relevant information prior to denyinga claim. It is undisputed that an insurer must conduct a reasonableand fair evaluation of the evidence in a non-adversarial fashion.

It is undisputed that an insurer may not deny or terminate a claimbased on speculation. It is undisputed that an insurer may not usebiased or predictable experts. It is undisputed that insurers have aduty to assist the insured with the claim. Despite the existence ofthese undisputed obligations that exist in the handling of firstparty claims, Defendants instructed their employees that it was theinsured's obligation to prove his claim.

Employees were instructed to limit their use of independent medicalexaminations ("IMEs"). Id. They were told that IMEs were not to beused unless absolutely necessary.

The foregoing are just some of the outrageous tactics used by Unum,Unumprovident, Provident Life, and Paul Revere companies. If yourdisability claim has been denied by Unum, Unumprovident, ProvidentLife, and/or Paul Revere companies you should consult with adisability claim lawyer.